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Just back from the neurologist (Read 1175 times)
Beastfodder
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Just back from the neurologist
Sep 26th, 2013 at 9:37am
 
Had this CH cycle off and on since February this year, with a couple of weeks off in June. Overall had CH for many years and things are so much better than they once were!

I've used O2 and clusterbusters exclusively since the cycle wasn't getting too bad but did get frustrating in August when I decided to see my Neurologist again. 

So having been p/f for two weeks my appointment was today ! By and large he's pretty cool with the clusterbuster technique which did help and has helped massively in the past but he came up with a couple of new treatments for the next time round, assuming this one doesn't come back too soon. 

Obviously verapamil was discussed but what was new to me was a general occipital nerve block. It's a steroid injection under local anesthetic which is getting an 85% success rate for episodic CH and 50% for chronic CH.

The other was vagal nerve stimulation using a handheld electronic device pressed against the nerve behind the ear.  Currently it's being trialled in the UK but I like the idea of non-invasive treatments with little or no side effects - anyone else here heard of it or had any success with it?
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maz
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Re: Just back from the neurologist
Reply #1 - Sep 26th, 2013 at 9:59am
 
Hi Beastfodder
I'm in the uk too.  I've not heard of this treatment before but just googled it. It's an epilepsy treatment. Not completely non invasive as you have to have the stimulator implanted in your chest. It then sends pulses to the vegus nerve. Bit like a pacemaker does for the heart I suppose.
It will be interesting to find out more.
Maz
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Bob Johnson
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Re: Just back from the neurologist
Reply #2 - Sep 26th, 2013 at 11:20am
 
Headache. 2013 Jul;53(7):1183-90. 2013 Jun 28.
Cluster headache: potential options for medically refractory patients (when all else fails).
Tepper SJ, Stillman MJ.
SourceHeadache Center, Neurological Center for Pain, Cleveland Clinic, Cleveland, OH, USA.

Abstract
The most evidence exists for mixed anesthetic/steroid occipital nerve blocks (which are also useful in non-refractory patients), deep brain stimulation, sphenopalatine ganglion (SPG) blocks, SPG radiofrequency ablation, and SPG stimulation with the Autonomic Technologies, Inc (ATI) SPG Neurostimulator, the latter approved in the European Union and reimbursed in several countries.

© 2013 American Headache Society.
PMID:23808603[PubMed]
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Bob Johnson
 
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Beastfodder
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Re: Just back from the neurologist
Reply #3 - Sep 26th, 2013 at 1:34pm
 
Maz - think there are a couple of different things on the vagal nerve stimulation one's invasive, the other definitely non-invasive - they spoke at a recent clusterbuster conference and was pretty well received here's a link to the company doing the tech in the US - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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ttnolan
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Re: Just back from the neurologist
Reply #4 - Sep 26th, 2013 at 7:00pm
 
Yes, it is a hand held device, completeely non-invasive (like a vibrator only giving electrical stimulation). Worth a try.
As for the nerve blocks. I doubt the 85% thing. I have read the papers, and considering they don't really look at how well it continues to work, and the numerous reports that "hey it worked" then "it quit working and now I am getting slammed even harder and another nerve block did nothing" are impossible to ignore. Again, worth a try though.

Edit: As for the truely invasive proceedures like deep brain stimulation... that sounds like a nightmare with poor results so far. I know people will argue with me on these points, but I would rather go the clusterbusters.com method long before anything that invasive and dangerous.
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« Last Edit: Sep 26th, 2013 at 7:04pm by ttnolan »  
 
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